October 22, 2007: Dilans headstone is in. It has been 4 months but they finally placed it. Check out the new pictures.
April 5, 2007: Happy Birthday Dilan! Dilan would have turned 15 today. We have decided to 'celbrate' his birthday-his life. We miss you Dilan. We will let 15 balloons go at his grave side in his honor. We will have one of his favorites-chicken parmesian. Dilan's METS are starting strong this year. Maybe if we all 'silently' root for the Mets, they will go all the way. As I sit here typing, Rebeka - a devout Yankees fan is watching the Mets. Leave a message if you would like.
December 23, 2006: Merry Christmas from my family to yours. It has been awhile since I updated this. This is not an easy time of year. It was 1 year and 3 days ago that Dilan received his bone marrow transplant. He was unable to be home last year for Christmas but he is with us this year in spirit. His strength and courage is helping us get through this "joyous" time of year. We will order his head stone early next year and have the "unveiling" in May or June. There is so much we want to say and yet what can you say. We hope that we can come to terms with this so we can begin to heal. I have contacted National Institute of Health (NIH) to enter into a study they have on DC. Hopefully our "curse" can give insight into this terrible disease and help others. Thank you for all of your support and sharing your memories of Dilan. May he live on forever in our hearts and memories. This is the time of year to sit back and reflect on the past so take time to remember Dilan and learn from his strength and courage and next time you are having a "difficult" time, put it into perspective and let Dilan lead by example. Dilan wanted to LIVE! and he fought every day through the pain and set backs - more than most of you know. He always talked about his future and what he WAS going to be and his wife and kids and so on. So be strong and enjoy every day. Life is short. When we were pregnant, people would say what do you want?(Boy/Girl) I answered A healthy child. Happy holidays and GOOD HEALTH!!!!
October 7, 2006: At 12:37 PM it will be 3 weeks since we lost Dilan. We are starting to come to terms with the fact Dilan will never come home again but as i tell the kids, Dilan will live on in our hearts. We planted some beautiful flowers around his grave and decorated it with fall foliage and some pumpkins. It is truely beautiful up there on top of the mountain, in an open field, next to the woods where the only thing you hear is the wildlife. Derek, Dilan and me used to go for long walks or ride our bikes into the woods or down an old railroad bed and catch frogs, salimanders and we even saw a bald eagle a couple of times. There was one living in the Basherkill near Wurtsboro. Those were great times that I get to relive in my memories. I can only hope that the pain and suffering were taken away as he crossed over and that he is able to live out his hopes and dreams wherever he is. Please share your memories by following the link tothe guest book below.
September 21, 2006: We laid Dilan to rest today in Milford Cemetery in a beautiful plot on top of the mountain next to the woods. There were clear blue skies and 6 deer to greet him. He was laid to rest in full Mets regalia. Thank you John, Liz, Jeff and Cele for arranging the reception. It was a perfect place and great food to begin the celebration of Dilan's life. Dilan was a very brave and strong young man that loved life, sports, cooking, fishing and oh yeah girls (lol). Dilan was only 14 years young but he touched many lives and went out of his way to help those in need. In addition to this web page, I have set up a Legacy guest book where you can write longer statements to celebrate Dilan's life. Please click the following link: Guest Book.Thank you for all your support and sympathy. Please share your memories of Dilan so that we can begin to heal.
September 17, 2006: The arrangements are as follows: Viewing at Stroyan Funeral Home, 405 West Harford St., Milford, PA, Wednesday September 20, 2 to 4 and 7 to 9 (Casual attire). A short ceremony at Stroyan Funeral Home at 10:00 AM Thursday, September 21. Burial will take place at Milford Cemetary immediatly following the ceremony. In lieu of flowers, we request that memorial donations be made to the "Dilan Phillips DC Fund" and mailed to PNC Bank, 240 Main Ave., Hawley, PA 18428. The fund will make donations to the various organizations that assisted us throughout his hospitalization. Thank you for your support.
SEPTEMBER 16, 2006: It is with great sorrow that I must inform you that Dilan made his own choice and passed away quickly and peacefully around 12:30 PM after a 9 month battle after having a bone marrow transplant with several setbacks. The family want to thank the staff at Hershy Medical Center for taking great care of Dilan and making the last 9 months tolerable. Dilan had made several friends there that helped him through. He enjoyed baking you cookies and cake and eating pizza at all hours of the night. Thank you for following his journey on this page and sending words of encouragement. This web page will forever live in honor and memory of Dilan and so his friends can share messages with and about him. I will update the page in the near future and share more pictures of his life. The family will meet tomorrow to finalize the arrangements tomorrow but for now we know Dilan's viewing will be at Stroyan funeral home in Milford, PA and he will be interred at the Milford Cemetary. The dates and times will be known tomorrow.
September 16, 2006: Dilan was slowly deteriorating but stable until ~8:30 last night when his sat O2 level dropped suddenly. They placed him on a vetilator and stabilized him. His kidney funtion has worsened over night and we are meeting with the doctors this morning to discuss taking him off life support so he does not suffer any more. Pray that Dilan does not suffer and that he makes a smooth transition to Heaven. Thank you for your support throughout this journey. I will keep you informed as events unfold.
September 14, 2006: Dilan has a bacterial infection with fevers spiking to 103F. They put him on Cipro but he is still having fevers. The lungs and kidneys are about the same. Overall he is a little worse but the big picture is he is not alot worse. Will keep you posted as things chainge.
September 12, 2006: Dilan is alot stronger than they had thought and even though he is slowly getting worse, he is NOT on a ventilator or dialisis yet. He is still strong but he is weaker each day. The big picture is to keep the mold in check until his immunity has a chance to recover and it looks like Dilan will have that chance. It is still a very long shot but they are giving Dilan a chance which is better than last week but he has a very long way to go and alot will happen until then. I will keep you posted as things change...no news is no major change-good or bad. Keep praying, he still needs all the strength he can get.
September 10, 2006: Dilan slept most of today and there was very little change. The x-ray of his chest looked better, but it may be attributed to a more aggressive breathing treatment. The kidney function test are up slightly but that is better than expected. They are concerned that the infection is in his blood and may have started in his brain. They are evaluating him to see if he is just very tired or something else. He had alot of visitors today and alot of support. Thank you for all your prayers. Keep it up, it may be working. Time will tell.
September 9, 2006: Dilan had a very uncomfortable day and he showed how strong he is getting up/down/left/right and every position in bed. He is so strong inspite of the massive infection. Dilans is now on 50% O2 at 96% pulsox and ~500mL volume. Dilans kidneys are showing distress but still good enough to not be on dialisis. Keep praying for him to hold the infection off until his immunity can kill it and keep the GVHD to a minimum. Thanx.
September 8, 2006: Dilans is now on 70% O2 at 96% pulsox and ~500mL volume. x-ray indicate that the mold continues to grow. Dilan's immunosuppressant Cyclosporine level is down to 50 from 200, so his immunity can begin to come back. He is getting a drug to help boost his own immunity and make it come along sooner. The doctors have said that ONLY Dilan's personal immunity can defeat this. So right now we are in a hold pattern and trying to keep the mold down as best as possible. Dilan is getting anxious and his attention right now is on getting a drink which his doctors have told him no due to possible aspirations. The next couple of days will be crucial and will give us an indication as to which way this is going. Dilan is very lucky he has seen much of his family over the last few days so there are people here supporting him. Please keep up your prayers and your thoughts positive. .
September 7, 2006: The Bi-PAP (Positive pressure breather) is opening up his lungs 60% O2 and 98 pulsox and 600 mL volume (was 450). They are trying to control the mold with 3 anti-fungal meds and have stopped his immunosuppressants. They hope that his immunity can come in and kill the mold before it is too late. This will open him up to a possible full blown graft vs host disease (GVHD) which can be VERY bad but at this point it is the lesser of 2 evils. If things work perfectly we want the mold to be held in check or reduce, Dilans immunity to come back strong (it may not) and effectively wipe out the mold, have no GVHD and no long term effects of the mold infection. His kidney function is way down and the doctors thing it will take ~ 7 days to clear out the immunosuppressants. At that point his immunity may come back and we most likely will see signs of GVHD. The hope is that they can hold all in check until then. As of today, Dilan has mold, yeast, bacterial infection in the lung and most likely in his blood, herpes simplex 6, the flu and a couple other unrelated bacterial infection. It WILL be an uphill battle, so we need all the prayers and wishes you can give. The doctors estimate a 10% chance of survival without complications that he is allready having. Dilan is alert and frustrated with alot of fight still in him, so wish him well. The doctors are actively working on lung volume because they expect it to get worse before it has a chance to get better. Thank you for your support throughout this time.
September 6, 2006: Dilan appears to be stable with 80% O2 and 97 pulsox. He does not like the mask and is showing that he has fight left in him. He is actually able to "cat nap" 15 minutes at a time. One important thing to note is Dilan is telling it like it is but he has never complained about "why me". He has accepted everything as a challenge and plowed through. Even though he has had so many setbacks he is still talking about being a chef and still wants to cook. He has been forced to "grow up" at such a young age. He is a MAN that knows what he wants and I defy anyone to debate sports with him. I know alot about sports, but when he gets rolling about sports, not too many people can keep up with him.
September 5, 2006: The family has gathered at Hershey to pray for Dilan. He has been diagnosed with fungal pneumonia. They are watching his kidney functions and he has fluid in his pericardial sac (fluid around the heart). They took Dilan into ICU at 12:30 this morning and are trying a positive pressure breather to help Dilan breath. NOW is the time to PRAY. He needs all the help that he can get. The numbers are not favorable but Dilan is very tough and we are trying to keep his spirits up. I will try to keep you posted daily as we find out more or if things change. They have Dilan on 3 different meds and they are removing his immunosuppressants in hope that Dilans own immunity can fight this off. It will take a miracle to pull through this and lourd knows that I had my share so why can't Dilan have a couple? He is very overdue for a break. Just so you know, I left Dilan yesterday looking like he was slowly recovering. I'll let you know how Dilan did tonight by noon tomorrow. Please pray for Dilan.
August 30, 2006: Dilan ran a fever at 1130 Monday night so Don & kathy admitted him in Hershey ~ 1AM and I showed up ~1:45. They did blood cultures and today he had a Broncoscopy with lavage. He has bacterial growth in his blood (possibly staph infection again) and possibly the beginning of pneumonia (Great catch Kathy, you caught his symptoms and low grade fever - we caught it in the early stages and hopefully a quicker full recovery). The final results should be in by tomorrow. Either way we are looking at the middle of next week for discharge from the hospital. We can't seem to get more than 2 weeks out of the hospital. The doctors are considering taking out his pick line and inserting a sub dermal line that has a lower chance for infection. His blood counts dropped drastically from last Friday to Monday. Hopefully it was the combination of blood bourn bacteria and "pneumonia" that caused it. They have seemed to level off for now. Time will tell if they start going up or not. Dilan was hopeing to see a car show on Monday, but it looks like he will be in here and miss another event :-(. I have to thank my work for letting me have most of this week off without a problem. I'm trying to take care of some loose ends down here so we can start working on getting dilan HOME. We ARE comming up on 9 months and it IS time. I have to work out Dilan's medical care at home and get his Hershy doctor comfortable with it. Hopefully they will replace his pick line so he will not keep getting blood infections and we can get back to a somewhat "normal life". I hope that the medical staff can see the sacrifice that not only Dilan has made, but his WHOLE family has made and continues to make. Hershey may be a nice place to visit, but there is the whole rest of the world that I intend Dilan and my family see and the sooner, the better. Enough ranting and raveing, I just want my family back and I think we have suffered enough! Let us pray that Dilan gets better and things go in his favor for ONCE.
August 24 2006: Dilan got out of the hospital on Tuesday August 15 with Dilan on "pressurized" IV antibiotics through Sunday. Dilan is staying at my brothers and his wife (Kathy) has been running Dilan to Hershey as needed. Dilan's hips and wrists are getting worse to the point where he may require hip(s) replacement in the "future". They are testing him next Thursday with a Orthopedic doctor. I am trying set up interim schooling.
August 10, 2006: Dilan got out of the hospital on Monday, July 31 and stayed at a hotel near the hospital. He stubbed his big toe on Wednesday and it blead pretty bad, so by the time they got done bandaging him up, it looked even worse. His counts were rising nicely to near normal levels. Many thanx to my brother and wife (Don and Kathy Phillips) for helping out the family. They volunteered to watch Dilan at their house "near the hospital", so we could take care of some last minute wedding preparations and help run the Tricky Tray fund raiser for the Pat Abrams Scholarship Fund (Pat is Rose's cousin that was a "Genuinly nice guy" whose life was cut short in a tragic auto accident. My brother called me Saturday afternoon and told me Dilan had a low grade fever (99.0). It went away and ~7pm started to slowly come back. By 9PM it was 100, so i packed up and headed the 120 miles to his house. when I got there, Dilan's temp was 101.3, so i called the hospital and had him admitted by 12:30AM. They have diagnosed it as a severe bloodbourn stapf infection. He is on a 10 to 14 day regiment of IV antibiotics. He is responding well but will miss our wedding on August 12. The doctors indicated that it was "very good" that Kathy caught the temperature and I got him there Saturday night. We postponed from last November to 8 months post transplant. The doctors indicated 4 to 6 months. However, Dilan is having a roughr time than expected. It is more important that Dilan get better and like Dan said, we will have a party for you when you come home.
July 30, 2006: Dilan's headaches are still at a high level and the doctors have tried all the meds for the headaches. They are going to try to get his life back to "Normal" and see if it will help the hadaches. We hope to get out of the hospital tomorrow. Please sign dilans guestbook and try to cheer him up. He needs to be cheered up.
July 22, 2006: Dilan has been having long term "migranes" and is currently in the hospital. They did a spinal tap to reduce craneal pressure but it wasn't that high. Now they are thinking possible virus as his blood counts are dropping (platelets have dropped from 128 to 81). Things were looking great, then the headaches and the count drop. We are hopeing they can figure it out, so he can eventually go HOME (7 1/2 months and counting...). Dilan got to ride in a tricked out Mustang (Saelene engine with a supercharger ~ 400 HP) on July 9 as the owner was having a fund raiser for pediatric cancer patients. Now we are wondering if he can go home for 2 days for our Wedding on August 12. He is strong, just tired of being sick. Keep up the words of encouragement and thank you.
July 3, 2006: Dilan's bone swelling is being attributed to severe arthritis and "Low bone density". His counts are increasing (Platelets 99, WBC 3.5 and HGB 10.8). Dr. Lucas mentioned that Dilan may be able to go home in" the next couple of weeks" if he continues to get better. Dilan's bones are very brittle and his joints are sore. I took him to the Harley Davidson factory in York, PA and took a tour. He had trouble lifting his leg over the seat of one of the bikes. He still has to wear a mask, but he wanted to get out and "do something". I went at the end of the day when things were slow and not too many people around. Dilan enjoyed. I have to start cleaning his room and turn on the air purifier. Happy 4th and bye for now.
June 19, 2006: Dilan had a set back on Monday June 12 they discover "Bone swelling" and a liquid sack on his 2-4 ribs. They did a biopsy to determine if it is an infection that came back negative. They thing it is an "unusual manifestation of graft vs host" in his rib cage. He is getting the BOOST today at 11:00. It will take ~4 weeks to see if it helps. Time will tell...who knows what the future holds. Dilan is still having good days and bad days but over all he is getting better and stronger. Hopefully he will be strong enough for the wedding or we might have to get married down here in front of the hospital. Keep sending those encouraging notes. L8R.
June 10, 2006: They harvested the donor's bone marrow yesterday and it is on its way to New Jersey for T-Cell depletion. HINT: Had some difficulties shipping it from the donors country with the world cup going on?. Dilan should receive it on Tuesday the 13th. Then we wait and hopefully his "Body" will continue to recover from the chemo while the bone marrow grows. It will take ~30 days for positive results.
May 27, 2006: The donor has agreed to give a boost to Dilan. It will be collected on June 9 and Dilan should have it by June 15. Dilan may get out of the hospital next week but we don't know where we will go nearby the hospital. Dilan is getting up and walking alot more to the teen center and cafeteria. He has to wear a mask, but he is out and about. The plan is for the bladder to keep getting better and to build Dilans muscle strength back up while we wait for bone marrow.
May 20, 2006: Dilan's DNA results are back.....The bone marrow is 95% donors and 5% Dilan's YES that is great news. The doctors are all ready contacting the donor (through the system) and asking for a boost sample of bone marrow. They are asking for peripherial bone marrow or they will give the donor injections to make him over produce bone marrow and they will collect it through IV like they do platelets. The bone marrow will then go to Hackensack, NJ for T-cell depletion (remove the donors anti-bodies), then frozen and sent to Hershey. This will take ~2 weeks. It will take ~30 days after Dilan receives the bone marrow boost to see results (hopefully). On the home front, Dilan's bladder continues to get better slowly and the Pneumatosis Intestinalis has subsided. Dilan islooking alot better than a week ago and I hope to get him up for a walk today. Thank you for the messages and I apollogize for the delay, but the DNA results came in Friday at 3:30 and I didn't talk to the doctor until 30 minutes ago.
May 13, 2006: The donors blood arrived and was sent out with a swab from Dilan's cheek for DNA testing. The results are expected by Wednesday (May 17). Dilan was diagnosed with Pneumatosis Intestinalis which is gas bubbles in the intestinal wall. They want to give his GI tract a "break", so the placed him on IV "food" on Friday for up to 10 days. The x-ray this morning indicated the gas voids has shrunk significantly (YEA). Now we wait and see how this goes while we wait for the DNA test results. Keep signing his "Guest book", he checks it daily.
May 6, 2006: The donor will give a blood sample and it will be here by next Wednesday (May 10). It will take ~1 week to test, so we are looking at ~May 17 for definitive results. Dilan had a bad bout with his bladder last weekend so thgey flushed it with "alum" to help "harden" the lining of his bladder. He currently has a tinge of pink but nothing major. If Dilan has the donors bone marrow, the doctors will have to re-petition for more bone marrow and if he accepts, we are still looking at "weeks" after the results. Dilan received his sign up schedule for 9th grade and he is excited to sign up for "cooking" classes (he wants to be a Chef). One of the helpers here told him to go online and pick out recipies, she will gather the ingredients and have Dilan mix it and she will bake it for him. They are very nice giving people here and it is helping Dilan pass the time.
April 29, 2006: The International Bone Marrow Foundation has OKd the request for a blood sample from the donor. Now the only hurdle is to get the approval from the donor which should happen by next week. Dilan's bladder is very good at this point with no clots and only trace ammounts of blood. They are giving him Nupagen to stimulate his bone marrow to produce more blood and wuill give him another med to stimulate red blood cell production. We will not know what bone marrow percentages are present until we have the donors blood sample. The chimerism test is basically a "DNA paternity" test to compare Dilan's DNA from his cheek to the donors DNA against the bone marrow DNA. I'll let you know if we hear anything.
April 23, 2006: The National Bone Marrow Program has OK'd the request for blood from the donor. Now its in the international BMP hands. We hope to hear this week if they will OK the request. Dilan's counts are still going down and he had another infusion of platelets today. They started giving him stimulating factors to make his bone marrow produce red blood cells. The latest news is that by "forward and Reverse sequencing" of Dilan's blood they have determined that at least some of it is from the donor. However, compairing the bone marrow from the 18th to pre-transplant bone marrow, "they look strikingly the same". They have ruled out the immune deficiency syndrome so we are hoping and praying that Dilan's bone marrow is weakened donors marrow and all Dilan needs is a boost from the donor. No sense in speculating until we have hard facts. Dilan's blabber is not bleeding and he is only passing small clots at long intervals. We will take any good news at this point! I'll let you know as new news is made available. Thanx for your support!!!!
April 20, 2006: Dilan had a bone marrow biopsy on Tuesday (April 18) to investigate why his blood counts have dropped off dramatically over the past week. Doctors thought it was due to the bleeding but now that the bleeding is under control or negligible and the counts are still going down "like he is not making blood cells". The good news is that the bone marrow "looks better" or more organized than February. The bad news is that they think he has an "immune deficiency syndrome" where his body is attacking his cells. They have petitioned the national bone marrow registry to obtain the bone marrow donors DNA sample to determin the percent of donor vs Dilan's bone marrow in Dilan. They are also asking for more bone marrow from the donor as a "booster" for Dilan. Hopefully the donor agrees to all of this. The doctors do not know why this is happening. More information will follow as it is made available.
April 15, 2006: Dilan is slowly getting better. They had to take out his broviac due to a bacterial infection in it that partially entered his blood stream. They inserted a prick line in his right arm that does the same as his broviak. Without a "port", he would get 5 to 10 "sticks" per day. He has a viral infection that put him into contact isolation and we are waiting on results by Tuesday 18th to see if he can come off isolation. That means that for Easter, he will be in isolation with limited visitation and if you enter the room it is in gown, glove and mask. His mother and myself can enter without because we were exposed prior to the diagnosis. We just can't go around other patients. Yesterday was a bad day...Dilan's bladder spasms got worse and inserting the "prick line" caused more aggrivation that caused his bladder to bleed steadily and he had to go into the OR to be scoped/cauterized and flushed last night. His urine is almost clear now but he is very tired today. Thank you for your birthday wishes and words of encouragements. The family is comming down today and eventhough we can't be with Dilan alot, we are going to celebrate Easter down here in the "home of their own" and bring Dilan his Easter basket. Hopefully this will inspire Dilan to get better mentally and physically. We miss him at home and it just isn't the same with him in Hershey. The doctor is saying 1 to 2 more weeks in the hospital, then to Home of Their Own for "several weeks", then maybe H O M E!!! Keep praying for him and sending words of encouragement. He needs all he can get. It has been a VERY long recovery time with many set backs that can get you down. He has been and still is a "trooper" and strong and we are VERY proud of him. Having been there with him...I don't know if I could go through what he has been through and I have been through alot with respects to the hospital. The main focus now is to get his bladder better but there are up days and down days.
April 1, 2006: Sory about the long delay...it has been hectic here. The blood in Dilan's urine has cleared up for the most part with minor spotting 1 to 2 times a day. His bladder has shrunk to about 1/4th the normal size due to muscle spasms. This cuase great pain and the sensation to urinate all the time. The Graft Vs Host is responding well to the medications and his liver functions are almost normal. Dilan will turn 14 on Wednesday, April 5....HAPPY BIRTHDAY DILAN!!!. We were hoping he would be home for his birthday, but it looks like he will be in the hospital :-(. The doctors are trying to control the spasms and pain through alot of morphine and muscle relaxers. They are going to stop his IV's at night to see if that will let him get some sleep. On a personal note, I have a new job after 7 months unemployed, so I am here Friday Nights to Monday morning and his mother is here Monday - Friday. I will update the site if there are major changes during the week. Otherwise I'll update on the weekends when I'm here and have a better feel for whats really going on.
March 20, 2006: Dilan had his bladder scoped to "see whats going on in there" and they found a very large blood clot, several bleeder araeas and unusual region that they biopsied. He was in for over 4 hours and they inserted a flush catheter so they could continuously flush his bladder. His bone marrow looks ok and he is officially blood type B+ now. They are cautiously treating the GVHD and the liver numbers are down indicating that it is working. Dilan is experiencing a great deal of pain related to his bladder (ranging forom 5 to 10 out of 10). He went down for a catscan this morning to see if more clots formed in the bladder and most likely, they will go back in over the next couple of days. Dilan is a very brave and strong person but this is definately testing him. I'll let you now as things progress...hopefully for the better.
March 18, 2006: Dilan had laser onb his left eye and bone marrow biopsy. His bone marrow is "normal" and progressing nicely. While he was under, they put a Foley catheter in to help ease the bladder spasms. The pain eased under morfine and sedation but it is still there this morning.
March 15, 2006: Dilan is getting platelets today as his count is down to 26. He is experiencing severe bladder spasms causing him a great deal of pain. they are giving him morphine and sedatives to try to control it. His EBV test is back and is negative (YES). Now they can agressively treat the GVHD with cyclosporine, sirolimus and methylprednisone. He is going in tomorrow for laser on his left eye to conrol "leakage". This is the same eye that he has had laser before due to his Coats Disease. There is alot happening in a short time...keep praying and I'll keep you informed.
March 11, 2006: Dilan is getting 2 units of blood followed by Rituxin for the EBV virus. The EBV counts at week 3 are down to 1 from 132. The Graft Vs Host (GVHD) is being held in check by the cyclosporine and Rapimune. Dilan is in need of blood and platelets because the GVHD compromises the netwoork that the blood is made on making it less efficient. Therefore, he will need transfusions until the GVHD can be aggressively attacked and destroyed. Hopefully the EBV counts will be ZERO next Wednesday so the can go after the GVHD. Dilan is very bored, "Sick and Tired" of being in the hospital, so please sign his "guest book" or e-mail him at dilan@phillipsdc.com.
March 6, 2006: They sent a sample to check the status of EBV (was 132 2 weeks ago and 26 last week). Results will be back Wednesday. They started the new immunosuppressant today and those of you at Wyeth might know, Rapamune (sirolimus). They are planning on the fourth rituxin on Friday and possibly leave the hospital next Monday ...the 13th. I'll keep you posted.
March 4, 2006: Dilan is getting his third Rotuxin today. He had a biopsy of his liver yesterday because his liver counts are high. The good news is that the EBV is not concentrated in the liver. However, he tested positive for Graft Vs Host disease. This is the acute version of it and the course of action is increased cyclosporine, a second immunosuppressant and methyl prednisone. The only problem is that they have to kill off the EBV virus before they aggressivly attack the Graft Vs Host or the virus will come back worse than before...a delicate balance of treating EBV and GVH.
February 27, 2006: Dilan went home on the 18th, but was re-admitted on the 20th due to blood in the urine and swollen lymphnodes. The doctors cauterized 3 areas in the bladder to reduce the bleeding and tested him for a virus (EBV virus) that would cause his glands to swell. The test came back positive and they started him on Rotuxin a drug that keeps his B cells in check until his T cells can grow and do it their self. Dilan had a severe reaction to rotuxin. However, it is the only drug that can help, so they pressed forward slowly with constant monitoring. Today, Dilan is getting the second round of Rotuxin (2 of 4) over 15 hours with pre medication to reduce the side effects. They are going to do a biopsy on Wednesday to see if he is getting Graft Vs Host disease as he may have some early signes of that. It is like a rollercoaster ride out of control...just hang on and hope for the best. If all goes well he may come home on Wednesday. Either way he will be back in the hospital next Monday for his 3rd Rotuxin treatment. Keep praying that everything will work out over the next couple of weeks.
February 17, 2006: Dilan was re-admitted to the hospital on Valentine's day due to blood in his urine. The doctors are monitoring it and they believe it was caused by the cytoxin they used back in December. They are hoping that it clears up (stops bleeding) on its own. If not, they will have to scope him and cauterize the part that is bleeding. That could risk infection and additional trama to the area. I didn't update due to the fact that they didn't know why he was beeding. They were flushing him with water 200 mL/hr. They just removed it to see how the color trends and maybe we can go "home" tomorrow.
February 10, 2006: Dilan's blood counts are almost in the low/normal range now. The doctor indicated that if things keep going good, then we might be able to go home within four weeks. Dilan's immunity is still very bad and he is on a medicine (Cyclosporine) that keeps his immunity low to reduce the risk of "graft Vs Host" dissease. His hair is growing back along with a mustache. It is still the waiting game. He will not be able to return to school until September due to low immunity.
February 4, 2006: We are moved into "Home of Their Own" (a nice 2 bedroom condominium 1/2 mile from the medical center). Dilan's counts continue to get better and are ~60% of normal range. Dilan is doing so well that we may be able to go home by the end of February (if he continues on this excellent path and he has NO setbacks). Time will tell.
January 25, 2006: Dilan's counts are up and based on the numbers he has officially engrafted. All of his counts are up without the growth stimulating factor. The trouble is that he feels great, but doesn't have immunity yet. It will take a full year or more before his immunity can be considered "normal". He will wear a mask in public for at least another 25 days. The next big milestone will be getting the injection frequency down so we can get the Broviak catheter out. Things are looking up. Thank you for your support.
January 24, 2006: Dilan is doing great. They said that as early as 60 days, he may be able to go out without a mask (i.e. his immunity is up to minimum standards). We will move to the "Home of their own" condominium next Monday. It has 2 bedrooms, kitchen, livingroom and hepafiltered air system. Dilan received 2 units of red blood yesterday, but that was the first in 12 days. He will probably need platelets on Wednesday, first in 5 days. The frequency of infusions are getting farther apart.
January 19, 1006: We went to an apartment yesterday and are back at the hospital for clinic (blood tests, ect.) and school. They are trying to balance the ammount of drugs they give him to make the bone marrow produce blood cells against their current abillity for production so that the counts stay in the normal range. All this is NORMAL and it is a delicate balancing act.
January 17, 2005: Dilan's white counts are 10100 and red blood is 9.1. His platelets are still going down but the frequency of platelet infusion is down from every day to every 3 days. The red blood cells are on their way up to "normal" range. We will be going to a modified (clean) apartment tomorrow. Dilan is doing great.
January 14, 2006: Dilan's white count is 2000 today. Going up fast. It will be another week before we see red blood cells and 2 - 3 more before we see platelets.
January 13, 2006: Dilan's white count is 700 today and his nucleocides are up indicating the engraftment is taking and not rejecting. We will see what tomorrow brings. If they keep going up, we may be out of here in a week and over to a hotel or condo.
January 12, 2006: Dilan's white blood count is 300 (YESSS...Finally). It is still very low but it is a start. The doctor indicated that it will be up some days and down others, but the general trend should be up. They have already started switching him off IV drugs to oral. The beginning of getting discharged from the hospital. It will still be several more days if not a couple more weeks.
January 10, 2006: Dilan spiked a temperature last night, but it went away as fast as it came. The doctors think it is related to the medicine he is on, but they did blood, urine and other screen to make sure. Today is day 21 post transplant and it is taking longer than expected to see white blood cells. The upper range is day 31. However, Dr. Lucas has petitioned the national bone marrow center to collect a booster ammount of bone marrow from the donor in case we need it. If he does not show a sign of engraftment by next Monday (January 16) they will do a bone marrow biopsy on Dilan to see what is going on in there. For now...we wait and hope the bone marrow grows and Dilan stays infection free. The doctor confirmed that the mini chemo regiment they gave Dilan to make room in Dilan's bone marrow, killed all of his old bone marrow, indicating that it was very weak and weaker than expected. Therefore, Dilan is living on blood and platelet infusions alomost on a daily basis. Dilan does have physical signs that bone marrow is trying to engraft (bone pain and sores in mouth are getting better slightly) but white counts are still less than detection limit :-( Lets hope and pray for something by weeks end so he doesn't have to go through the painful biopsy (a cork bore in the hip). Dilan is still in good spirits, so lets keep him in good spirits by wishing him well. Thank you for your support is this trying time.
January 6, 2005: We are still waiting on the blood counts to increase. It should happen within the next seven days. In the meantime, he is getting blood and platelets to keep his red blood cells and platelets up. Otherwise, he is "healthy" and ready to get out of the room. I'll update if something changes. In the meantime keep sending e-mail and sign the guest book. Grace, thank you for being Dilan's pillar of strength and encouraging him to get better.
January 2, 2006: Dilan is OK and in good spirits ... all things considered. We had to move rooms because the old room lost temperature control and nearly froze us. Dilan's white blood counts continue to be at 0.1 or less. The doctors expect it to increase in the next week. Dilan has a "Double Lumen Broviak" in his chest to get his meds through and the white one is clogged. Ther are trying to clear it but the may have to give him his cyclosporine by arterial (IV in his hand) if they can't clear it soon. He is in NO danger, it will just be uncomfortable. :-( Dilan's hair fell out Friday night, so we shaved the rest at midnight. He handled it well and it helped that he is a wrestler and I told him when he goes to states next year, he will have to shave it anyway. The doctors said that it will start growing back in 3 to 4 weeks.
December 30, 2005: Dilan is doing great. He is disconnected from the "IV tree" and free to roam around the "spacious" 10' x 10' room. He is still in isolation as his blood counts have not started to increase yet. They are expected to start as early as Monday, January 2. The doctors have been indicating that Dilan is doing so well that they may discharge him early if his blood counts come in as expected and he stays free of infection. Discharge means we get to go to local "Hershey" housing and visit the hospital 4 to 5 times a week for 2 to 4 hours per day for bloodwork, infusions of blood and platelets and of course schoolwork. I'll let you know when the blood counts start and if something changes. Happy New Year !!! L8R
December 25, 2005: Merry Christmas!!! Dilan is doing better than the doctors had hoped. He has developed some mild mouth sores, but is still eating, so he is off the IV food for now. Santa was able to find Dilan here at Hershey and he got some nice gifts to help him pass the time and some BLING necklace. He is in good spirits but he would like to hear from you. Please sign the guest book or send e-mail or regular mail. We want to thank the "Tech Ed" class for making/selling and donating the profits to Dilan. The wooden sled that he received is beautiful craftmenship and cheered him up...keep up the good work. Still will not know if the graft will take for another week, but will keep you updated. Bye for now and Happy Holidays.
December 23, 2005: Dilan is doing OK with little mouth and throat sores. His leggs hurt from either some meds they gave him or the bone marrow entering his bones. He is trying to eat a little at a time. The doctor indicated that it will be middle of next week at least before we see any signes of the new marrow taking hold i.e. blood counts start to increase. Most important is he is relatively comfortable and no infections.
December 20, 2005: Dilan received the bone marrow at 10:30 this morning. It came in 4 bags of 50cc each (or 200cc) bone marrow and looked like red koolaid. He is a little tired and hopefully will rest today. His appetite has dropped off and they may hook him up to IV food but this is normal for 95% of patients. Now we play the waiting game for 2 to 4 weeks to see if the graft will take and grow (keep your fingers crossed). The donor was male and if all goes well, dilan will switch from O+ to B+ blood type. They expect Dilan to get mouth and throat sores from the chemo and for hair to fall out by Christmas (I think I would prefer coal in my stocking). :-( Will let you know as "things" progress.
December 19, 2005: Dilan Is done with the chemo and steroids. The only thing he is on now is cyclosporin, some stomach calming medicine and fluids. His white blood counts are under 200. We are a go for tomorrow :-). I'll let you know how it went tomorrow.
December 18, 2005: Dilan is done with Fludaribine and today is his last day of cytotoxin and ATG. He startied Cyclosporin to help prevent Graft Vs Host disease. His white count is at 400 and in range for the bone marrow transplant. His stomach and throat are bothering him today and he is tired and trying to rest. He will receive his bone marrow ~10 AM on Tuesday December 20. Keep praying for him. He is strong but anything helps.
December 15, 2005: Dilan is on schedule. He got a staff infection the first day (Dec. 13th) with a 102 F temperature. They gave him antibiotics and he is better now. This is the third day of Fludaribean and today he is receiving ATG which will kill off his T-cells (immunity). Three more days of ATG, Monday is a day of rest and Tuesday December 20 he will receive the bone marrow.
December 13, 2005: Well we made it and are admitted to the hospital today. Dilan had his first chemotherapy today. We are in the room and the christmas tree is up. I hung the posters that you signed on the wall. Only 41 days until we get out of the room (LOL). Thats all for now, I'll let you know how it's going by Friday.
December 8, 2005: Dilan's CT looked good and he received 2 units of packed blood. We will be admitted to the hospital next Tuesday December 13, 2005. It will take 6 days to lower his immunity and kill off some of his bone marrow, rest for a day and receive the bone marrow on December 21. I'll keep you posted.
November 28, 2005: The biopsy indicated no infection, cancer or fibroids. The cells were "Hysteocyte cells" (not sure on spelling) that everyone has indicating he is having some mild alergic reaction to something. They will do another CT on December 8 to make sure the nodules are same size or smaller and we are still to be admitted on December 12.
November 25, 2005: Dilan had a needle biopsy on his lung on Wednesday Nov. 23 and the doctor said that he got "alot of cells". We went back to Hershey for bloodwork and X-ray to make sure his lung is not infected or has liquid in it. His platelets were 92 so he didn't need platelets to the doctors surprise. The biopsy results will be in Monday and the NEW entry date for bone marrow is December 12 but that is contingent on the biopsy results. I'll update on Moday with the results.
November 17, 2005: Dilan's CT showed ~6 "nodules" on his lungs ranging from 2 mm to 5 mm in diameter. He is scheduled to go back to Hershey next Wednesday and probably stay over until Thanksgiving. They will take a biopsy of the nodules with a needle and let us know the results by Monday November 28. They had changed the admission date for the bone marrow to the 28th but that is uncertain at this time depending on the outcome of the biopsy.
November 17, 2005: Dilan had his testing yesterday and did fine. Today he had the Double Broviak Line placed at 11:30 this morning. He is recovering great. Tomorrow we have a debriefing with Dr. Lukas at 8:30, then we can go home. On Saturday a local nursing staff will come to the house with supplies and show me how to change the dressings and flush the Broviak.
October 31, 2005: Hershey set up Dilan's pre BMT testing for Wednesday November 16 to Friday November 18. He will get an ECO cardiogram, pulmanary testing, CT, Lots of blood work and a "double lumen brovige" (central line to the aorta). The central line is used for everything from blood testing, medication, transfusions and the bone marrow.
October 28, 2005: Dilan went to Wills Eye center in Philadelphia and found out the capillaries in the left eye were leaking, so they hit the retina with 209 pulses of a green lazer to stop the leaking and restore blood flow to the area.